Pages

Sunday, April 8, 2012

Misery

I mentioned it was coming in this post, and now it's arrived. Kaia got a cranial molding helmet on March 31st. Due to her position in the womb Kaia has a bit of torticollis (ie: a stiff neck where she tends to look to her right rather that her left) and associated plagiocephaly (asymmetric head and facial features due to only laying on one side of her head). We decided to wait to start weaning her into the helmet until after the cast was gone since it was only a few days later. I mean who wants to be in TWO pieces of corrective gear at the same time that leaves only your shoulders, arms and face uncovered? Can you say hot and uncomfortable much? Last week I basically put her in the helmet in order to take a few pictures.

I call this series "Fun with Orthopedics".

Anyway, on Wednesday after the cast came off we started putting Kaia in her helmet.

She was okay for an hour or so...

...and then the tears started.

Like really started. Screaming, crying, tears rolling down the face.

So, like the directions say to do, we took the helmet off for a little while and then tried to reapply.

Once again, okay for an hour or so...and then nuclear meltdown! Tears, red face, wailing.

Took it off.

I thought it might take a few days for her to get use to it, generally getting easier each day...but so far each time we put it on, it's the same. She's irritable, but able to be distracted for 30 to 60 minutes and then breaks down into an all out cry fest. We are suppose to work towards getting Kaia wearing the helmet for 18 to 22 hours a day. At this point we can barely manage an hour at a time, and the one time she fell asleep in it, she woke 10 minutes later screaming. You'd think we were in the movie Misery with Kaia as James Caan and I'm Kathy Bates!

I'm not sure what to do. On one hand, I really want her to wear it. Her facial asymmetry is noticeable and is currently correctable due to the malleability of infant skulls. But, once kids hit a year old, the helmet no longer works as the skull becomes too hard. If we don't do it now, we won't be able to try again later. I don't want her, or us, to look back and think "damn, I wish we'd persisted with that helmet" because Kaia feels uncomfortable about the asymmetry of her face. Plus we went to the trouble to getting the helmet made, and it seems such a waste not to put all our effort in to making it work.

On the other hand, Kaia's head shape has improved since she was born even without the helmet and I don't know that it won't continue to improve over time all on its own. Evidence based medicine doesn't conclusively prove that cranial molding helmets are any better than repositioning and physiotherapy especially in mild cases.

The biggest thing is that I *HATE* seeing her so upset over something that we are CHOOSING to do to her. The Spica wasn't a choice. She needed to have to hip fixed. It wasn't optional. The helmet, on the other hand, is considered cosmetic (and costs $2000, thankfully our insurance paid for it). What if we keep trying and trying and trying and she still doesn't get use to it? Before getting the helmet, I checked out the babycenter board that deals with plagiocephaly and torticollis and everyone else's kid seemed to get use to the helmet within a day or two. I'm frankly shocked it upsets Kaia so much. I don't know if it's the tightness on her head, the heat of the helmet, the weight of it, the chin strap that holds it on, or just her rebelling against being put into a restrictive device (again!), but man is it awful to see your kid wail like that. Kaia is not a big crier normally and I feel a bit at a loss of what to do in this circumstance.

Do I pull on my big girl panties and just let her wail, in the same way parents sleep train their kids with the cry it out method (a method we have so far avoided might I add)? Will it even help? If I knew it would take one or two stints of just letting her cry it out, and then she would wear the helmet no problem, I would be willing to go along with it...but who knows if it will work? Do I wait for 10 minutes of crying? 20 minutes? An hour? 2 hours? Will it end eventually? Plus the problem with the helmet is that you can take it off. In fact you're suppose to, at least a few times a day to wash her hair, clean the helmet and readjust it. What if she screams like a banshee every time I go to reapply it? Unlike the Spica, which didn't come off, the very design of the helmet being removable almost seems to make it harder to "get use to". Kaia and I know it's "optional" and thus we know we don't have to tough it out. It's also sad to see how HAPPY she is when it comes off. The tears stop and she's all smiles again, and visibly more relaxed.

The other part of this is that I'm so SICK of making my kid miserable! While Kaia coped in the cast, it was restrictive and she frustrated more easily and whined more often. The cast also did not allow her to develop appropriately. It's become very obvious since the cast came off that Kaia is going to have a lot of catching up to do to get to where her peers are. She can't sit up. She can't crawl. She can't scoot. She can't roll from back to front (although she has managed front to back a few times). She can't weight bear on her legs, and the left leg (the bad hip side) is VERY weak, to the point of being almost immobile. She can't bring her legs together and they are in relatively the same position they've been in since January. This means we have to be careful the way we hold her in order not to cause her pain by applying pressure to the outsides of her legs. The surgeon said it might be 6 to 12 weeks (or more) before she is able to close her legs, which means pants are still currently out. It's understandable, but frustrating. She's behind due to her prematurity in that she is no where near able to do what a typical 9 month old can...and now she's way behind what she should be able to do for her corrected age. I know she'll get there eventually...but it's going to be a long road. Adding a helmet that she hates seems kind of cruel at this point.

I don't know. Honestly, I'm kind of stressed about the whole thing.

Anyway, I think I'll go have a white chocolate cupcake with strawberry frosting that I made for Easter dinner. At least I can always count on cupcakes to make me feel better.

10 comments:

I'm sorry Kaia is having a hard time with the helmet. I wonder if it's simply the fact she's having to hold her head in uncomfortable position that is bothering her (because her neck muscles are strained or whatever?). Anyway, she looks super cute despite the brace and helmet. You're doing a great job.

Personally, I don't see any asymmetry in her face, but maybe you just can't capture it in pictures.

These are the hard choices we make as parents...I googled a bit and it seems the helmets make a HUGE difference in plagiocephaly. I think if you are taking a poll, I vote to keep up with it. It's so hard to make your kids feel uncomfortable, even when it's for their own benefit.

I don't see anything wrong with her face either...plus, anything that might actually be there will eventually be covered by a headful of hair. While I'm not in your situation, I'm not sure I'd push her to wear it. =)

Kaia is beautiful and truly, like others said, there is no noticeable difference in the pictures. This is a tough call, for sure, and you and your husband and beautiful Kaia have some tough days (hopefully just) ahead as you push for her to get comfortable.

Awwwwww. I have NO idea what you would do. That is SO hard. I have no idea which I'd choose. :(

And RE: your comment on my blog - in five years, I'm sure you won't be able to tell the difference at all. If we had to the two girls together (which...we should!! haha) they'd be running and jumping and any differences would be just based on heredity. :)

we had a STARband for my youngest to help with plagiocephaly and it definitely took time to get used to it, but in the long run I would do it again if indeed to. I wrote a post about it if you're interested...

Love the new look of your blog. Made me smile to see Kaia smiling at me.

The comments with her photos also made me laugh. Too cute!

I'm sorry to hear the helmet is so tough on all of you. Like others have said, no idea what you "should" do - I hope you can go with your gut on this one, whatever that's telling you.

and when I read your comments about comparing wearing the helmet to CIO, I sighed inside as that reminded me of our sleep situation. Like, if I *knew* CIO would work with Allie, and it wouldn't last for weeks on end but would only take a night or two - I would really consider it. But the not knowing part keeps me from trying. And speaking of Allie's sleep - thank you so much for taking the time and effort to comment on Kaia's sleep and her routine and to send me the link to your friend's blog. Still don't have any other "plan" in place, but we'll see what develops over the next few weeks.

we have the Doc Band with my 9month old. He has brachio with plagio. The first week was kind of tough, during the day he was pretty much ok, but at night he would cry bloody murder! I tried everything to sooth him but in the end I had to just let him cry it out. It was hard to just let him lay in bed crying because of his helmet. But it is totally worth it! He cried for about 5 days, he's completely fine in it now & we could see lots of positive changes within the first 2 weeks. I would totally encourage you to keep trying the helmet.

Aidan's Egg

Aidan in a Rainbow

Aidan's Day Flower

Aidan in Candles

Aidan's Letters

Aidan's Cupcake

About Me

Married, early 30s, Registered Nurse, former and current congenital cardiac patient, difficult pregnancy, lost my son at 23 weeks + 3 days in 2010. Had another nail-bitter of a pregnancy in 2011, but my daughter arrived alive and is now healthy. Here is what follows.